Friday, January 29, 2016

If you're not familiar with the campaign #HelloMyNameIs, you should definitely check it out. The simple, "one liner" explanation of this movement is this: #HelloMyNameIs is a campaign for more compassionate care. It was started by a woman named Kate Granger who, while spending time in the hospital made the observation that she often didn't know the names of the folks who were caring for her. She started this campaign to remind the staff about the importance of introductions.

In a conversation with a friend yesterday about the experiences of a recent hospital stay, we were reflecting on the infection protection protocols for caring for people with cystic fibrosis. Before anyone enters the room of a person with CF, regardless of whether it's a room in a hospital or an outpatient room for a regular well visit to CF clinic, the recommendation from the CFF and typical implementation is that they put a gown over their clothes, put gloves on their hands, and add a mask to their face. This is a picture of nobody that I know taken from Google images that represents pretty well what everyone that we see when we go to the doctor or hospital looks like, perhaps minus the cap on the head:

The nurse who takes our vitals is dressed like this. The child life specialist who offers toys and welcomed distractions is dressed like this. The folks who place a PICC line are dressed like this. The nurse or VATs team who shows up to replace the IVs that blow, sometimes multiple times a day, dress like this. Other people who dress in this garb include the doctor, the resident, the fellows, the respiratory therapists, the dieticians, the social workers, the GI docs or ENTs, the cleaning staff, the folks who deliver our meals, everyone who enters our room comes in dressed this way. Name badges, something worn by everyone who works in our hospital, are hidden beneath all of the armor worn by all of the folks caring for us, in any capacity, designed to protect us from infection.

So lets imagine for a moment the trauma that a 5yo endures needing to be restrained to replace a blown IV line. Or the frustration they might feel being woken up for a blood draw at 2 am after having just fallen asleep. When we've spent 3 hours in clinic for a well visit and we've received our after visit summary, ready to go, and then someone new shows up for a "quick culture" or a "short survey", there's frustration felt, especially so when we don't know who they are. When everyone who enters our room looks nearly identical, there is unnecessary fear, anxiety and frustration raised when a nice gentleman coming to deliver a meal is mistaken for someone who might be there for another IV replacement.

What if we added one more piece of armor to the garb, a simple name badge that said "Hello! My name is..." and maybe even their responsibility, the way they're feeling, or their favorite thing to do on the weekend? What if my nurse walked into our room for a clinic visit with a badge that said Hello, my name is Susie and I like warm hugs? I know my kid would be thinking about Olaf and not the fact that shes about to gag him with a culture swab jammed down his throat. Or the food delivery gentleman, "Hello, my name is Sam and the pizza here is my favorite." I think this could go a long way. Whose willing to try it? I'm offering free "Hello! My Name Is..." to the first clinic to test this out.

Or maybe we should think about doing this in reverse, starting with patients! What if we all started wearing these name tags, patients and parents, giving our care teams a glimpse behind the title of patient. What if our kids could make their own, maybe even drawing a picture of how their feeling, starting to share their own narrative, in their own way?

"Hello! My name is Erin and I'm the mom of 4 little kids. I like to read books and connect with like-minded folks on social media. I'm scared about this upcoming visit and what we might learn that could change our life in so many ways." Let's bring #hellomynameis across the ocean in a real and meaningful way. Whose with me?

Tuesday, January 26, 2016

I'm sure that some of you have been following along with my dear friend Breck's current situation with her son . She's got understanding from the rest of the CF community who lives through these same trials and tribulations every day, and shes got empathy and compassion from just about everyone else that I can imagine as she handles this situation with courage and grace, and shares about it bravely. I love her dearly, and I'm pissed off.

For those of us living with chronic illness, there is never time later. The frustrations of the current healthcare system, the shortcomings that we are just left to wade through on little sleep and high emotion, aren't getting fixed because when we are in the midst of them, our short term goal is to simply get through it. We do it the best way we know how, fighting the fights that we can, using what energy we have, and we swear that when we make it through this something is gonna change. The reality is that we are never through it. We go from one situation into the next into the next. There is never a period of time where our spirit and soul can handle fighting so hard for what we want changed while we carry the weight of the illness and the situation at hand. But it must! It must change.

There are guidelines from the CFF that are saving lives, infection protection guidelines that are recommended, based on science, evidence, proof, that their implementation will help to halt the spread of infection, yet I regularly read of discrepancy of implementation of these guidelines, hearing from friends and relatives who work within the CF community that institutions don't or aren't able to implement the guidelines for numerous reason. Health literacy is so low for so many people, and what they don't know is killing them. How can they insist that CFF guidelines be followed when they don't even know or understand them themselves? When we blindly trust our care teams, that they are doing all that they can for us, we also have to realize that sometimes we need more than they have. We parents, patients, we need to play an active role in understanding and managing our health and care.

This isn't just related to infection control. Some centers do cultures every visit, some do them twice a year. Some reuse nebs on the inpatient units, rinsing with sterile water after each use (which sort of blows my mind that anyone thinks this "cleans" a dirty neb?) while others use a new neb for every treatment. There is discrepancy in the order medications should be taken, the air pressure that the nebulizer should be set to, the recommendations on enzyme brand or dosing, when you should opt for a PICC line over an IV and who gets to decide how many times the kid should pricked before a change is needed. Some centers offer patients help with organization of co-pay assistance programs while others are only fortunate enough to learn about them if they stumble upon the information on Facebook. Even when we do figure out what's "best", or even whats best for us, then we have to see if our insurance company agrees. This isn't just in CF care, it is happening in chronic illness across the board and its simply unacceptable. Then armed with the experiences of dealing with these insurers and these drug companies and knowing what trouble one will have to go to in order to have a certain care regimen approved or denied, patients are only being given the easy option, because no one has the time to fight, to figure out how to navigate the appeal process after one received a decline. And even if someone does it and shares it there is no guarantee that it will work for the next guy. But we share anyway, fighting as hard as we can with all that we've got.

In a conversation with my dear friend about this surgery her son is going through, we started to reflect on how little we actually know. And not like me and her "we", like the whole community. We are guessing so much, trying new things based primarily on the advice and expertise of our doctors and care teams, patched together with what we may have seen Facebook or read on some blog. This is how we are running this game. We are trying to figure out what works for us, personalized and precision medicine, but I know that precision medicine isn't going to work beyond me if there isn't a way to capture and organize this learning. How can my experiences make it less shitty for the next guy? What order of medications, or infection control protocols are going to give me the best shot? If the health literate, like us, like folks in other chronic illness categories are having this hard of a time navigating the system, it feels hopeless for everyone else.

How do we change this? The weaker man is the only one compelled to fight like this, who sees the things that need to change, the things that really need to change, firsthand. We are exhausted, and desperate, yet hopeful. We appreciate the efforts of those trying to help, but we've gotta figure out a better way to help you help us with what we really need.

I described to my friend last night how looking at her situation has given me a little perspective. I finally feel like i'm on the outside of the snow globe looking in. I think of this life a little like a snow globe. Its pretty and peaceful, but not much ever changes. We are trapped inside of this thing called chronic illness, and while its changed our lives in unimaginable ways, both good and bad, we can't get out. Every once in a while something shakes us up and it takes a while for us to simmer back down to our peace. It feels like a dream sometimes, but waking up just takes you right back to more of the same. Its the same routine, usually plus a few every couple weeks or months or years, never less. Its exhausting to think about it, much less live it. And there's never time later. What can we do today, right now, to change that?

Friday, January 8, 2016

There's a fascinating article that I was digging into earlier today that was published near the end of the year 2000 called "Healthcare in a land called PeoplePower: nothing about me without me." First of all, how I've never read this before is a mystery to me. It's about a new and perfect system for healthcare for a mythical republic called PeoplePower that was dreamed up by a group of folks from varying backgrounds with their guiding principle being "Nothing about me without me." Amen I say to that!

The ideas that were expressed in this paper, which I highly recommend you go read - heres the link again - were the groundwork laid 16 years ago for where we are today in healthcare and where we still need to get to. Some of the highlights:

computer-based guidance and communication systems;

patients and clinicians depend heavily on secure electronic mail for communication and a growing number of technologies help patients monitor symptoms and signs in the home;

the Internet-based patient record exists as a single version that resides nowhere but is available everywhere;

patients have nearly complete access to their medical record (although they don't have to review their record if they don't want to), but they also write in it, elaborating, tracking and explicating problems, correcting mistakes, prioritizing needs, and at times suggesting both diagnoses and treatment plans;

shared decision-making as a national standard for clinical interaction;

data donation with opportunities to aggregate data,
establishing a `virtual' national laboratory that
houses standardized, core measures of the
processes and outcomes of care to allow for the conduction of evidence-based, epidemiological research that
informs and improves care;

a constant stream of feedback, both through surveys designed to provide aggregate data and by inviting individual anecdotes;

patients join in a wide variety of hospital efforts, ranging from ad hoc work teams developing new initiatives, to the array of committees overseeing different hospital functions;

those who legislate, regulate and pay for health care work closely with patient advocacy councils and include lay representatives on their principal committees, working groups, review boards and consensus panels;

a level of service that delights and surprises both the `caregiver' and `caregetter' with unanticipated levels of excellence.

Can you imagine if we had these things, like all of these things, in place and working smoothly today? I, for one, wouldn't have a kink in my neck from the stress of the past week trying to navigate the mess that is new insurance. What do we need to do to get from where we are to where we need to be? How can we expedite things? How do we achieve this, something that was written about in just exquisite detail, capturing exactly what we needed, then, and still now?

My experiences over the past several days and years leave me frustrated and scratching my head, trying so hard to identify where the system breaks down. There are so many moving parts, and there as so many good people doing some many good things with very little, if any, insight into whats happening with every other component. A drug company may design a great patient co-pay assistance program, but if the patients insurance won't allow the patient to obtain a brand name version of the prescription, something required of the co-pay program, understandably, then there is no benefit to the patient after all. Many people with chronic conditions carry more than one insurance, with the secondary often being a form of government support. That support is rendered useless when your primary insurer requires that you receive a 90-day supply of your medications but your secondary insurer will only support whats not covered on a 30-day supply.

Everyone seems to be doing really well at whatever it is they are doing, but we haven't quite yet figured out how to all work together - the clinicians and the patients and the policy makers and insurers and drug manufacturers. We meet in groups maybe sometimes, but it is rare that we are often all together, working together for the greater good. No doubt work is constantly being done for the greater good, its just not happening all together, its happening in silos. The value to breaking down those silos of excellence, connecting them into a circle of excellence, to all of us, is huge; to really take a leap and achieve something new, really different and better and transformational. I think its under appreciated how much everyone would benefit from this collaboration.

Its often not until a unique perspective is added that you have the opportunity to see something differently. Someone I work with and greatly admire often uses the analogy of the high jump, and how for the longest time, the record stood at something around 8ft. For many years. humans simply couldn't jump higher. Until, someone looked at things differently, introduced a new mechanism, and the pole vault took humans to more than 20ft in the air.

This healthcare thing seems an impossible task to repair - everyone with their own expert opinion on why its not working the way it should and whose fault is what - but its exactly what we are doing with our C3N work. Rather than designing components of a system, or perhaps even fantastic micro systems functioning completely independent of one another, we believe we can achieve better health and care by bringing all of the parts together. We started with an exercise quite similar to what was done at the Salzburg Seminar where PeoplePower was dreamed into mythical existence. We brought the patients and the clinicians and the researchers and the social scientists and the artists and the reporters and the policy makers and the administrators and the advocates and anyone who touches the system for CF care, we brought them together to dream about what our perfect system would look like, and at that time, we too, left feasibility (at least tried to) at the door. We had to imagine it first before we could dream it right into existence. And once we had that framework we started to get to work, trying to figure out more specifics, identifying barriers to creation or implementation of some of the things we had come up with. We split into groups and worked with others inside of the community who shared our passion, and we would then converge again as a whole to see how our parts fit together, how our system could work. We thought about how we would measure success, and we started to test and prototype some of what we were learning. We realized and appreciated that this wasn't going to be something that we create and then wipe our hands of and carry on happy, but rather a dynamic and forever changing and evolving system that invites and values collaboration and innovation from every single person involved.

That's where we are today. With support from the CFF and more people inside of and outside of the CF community than I can possibly name, we are piloting this work at a handful of CF centers across the country, with the hope to transform the entire CF system over the next 3-5 years (my number, don't hold anyone else to that) to test the impact of some of these different ideas on health and care. The goal? To achieve much of what was dreamed about 16 years ago, what I bullet-ed above. Scroll back up now and take another look. Go read that article, and think about how nice it would be if the system for CF care functioned like it did in the mythical republic of PeoplePower. The success of our transformation is dependent on people power - you and me and everyone who wants to see success, however you define it. Its about all of us working together for the greater good. And I'm all in.

Wednesday, January 6, 2016

Not much to update since the post about my fifth trip to the pharmacy to pick up our prescription using a new manufacturer copay assistance program. Our dietician has been wonderful, working late trying to help other families realize the benefit of this program and helping us to navigate the obstacles that accompany anything new. She called me this afternoon to let me know where she was with talking to the drug rep and figuring this out, and we talked for a bit about how we might help others to realize the benefits of this and other drug manufacturer programs. I mentioned that we don't typically qualify for patient assistance programs as they are often income based, but we discussed how there seems to be a difference between co-pay assistance programs and financial assistance programs. Give the prevalence of high decuctible insurance plans, many companies are offering these co-pay cards now and they help out tremendously.

After I got off the phone with her I did a little digging and I just have to share what I've accomplished with about 4 phone calls over the past 3 hours, both because i'm excited by and proud of it, but also because I hope someone reading this will be able to do the same! I got co-pay assistance for two more of Drew's medications, Pulmozyme and Tobi, and here's how:

I got aPulmozyme co-pay card quite easily with this link https://www.activatethecard.com/pulmozyme/welcome.html#. I was able to print it out as soon as I filled out the information. The only hiccup was when filling out the information for the card I had to use my name rather than Drew's because someone older than 18 was required to do it. With our insurance (CVS Caremark Specialty) and our new HSA plan, the out of pocket cost of the medication for us would be $2964/mo, and using the co-pay card the cost to me will be $30 and $2934 will be paid by Pulmozyme toward my deductible. This only works with a 30 day supply, not 90, and is good for covering up to $10,000 in a 12mo. period.

Tobi also has a co-pay program for people with high deductible plans and with no government insurance. You have to call them at 877-999-8624. Online it is advertised as being for Tobi Podhaler but they also cover the nebulized solution. They give you a card number on the spot and all the other information you need to give to the pharmacy but do not have a physical card that they send to you or that you can download. You also can only use this on brand name Tobi, not a generic substitution. This also only works on a 30 day supply, but will cover up to $14,000 annually and renews automatically. The cost with our insurance for a month supply of Tobi is a little over $3,000 and with this co-pay card the cost will be $4 and Tobi will pay $3000 toward our deductible.

So the GREAT news here is that between his Creon, Pulmozyme and Tobi, Drew will meet his deductible when I get the prescriptions filled later this week. This means our families out of pocket expenses have been cut WAY down for his care. The value of doing this first thing in January is that his deductible is met before he has any other medical expenses for us to pay out of pocket. And dare I call it easy? Without the struggle to get the Creon prescription filled, I would never have had the conversation I had with his wonderful dietician to become aware of other manufacturer co-pay programs or explore them to see what the opportunity might be for us. So while it may be the only thing that I accomplished today, it saved us more than $6,000 in prescription expense this month and in doing so lowered the cost for all medical expenses for the rest of the year. The only thing that could have been better is if I still had Better to do it for me. That's another blog post altogether, but the long and short of it is that most people don't have the time or energy to spend half a day digging and calling and calling back and sharing and learning, and a company like Better, something that truly helped to lighten the cognitive load for patients by taking on these important and time consuming tasks could really help the whole healthcare system in a real way. I was so sad to see them go, I just don't think the world realized just how valuable this service is, to patients and ultimately the entire healthcare system. I miss you, Better!

In the car on the way to school this moring, the normal bickering of siblings started just as we pulled out of the driveway. It ended moments later with one in tears because another had called them mean. To be fair, she was being pretty mean. I started to think about how we build self confidence, in ourselves and in our children. It's constant and ongoing. That confidence, often mistaken as arrogance by some other adults, many of which are mean themselves, is something that we can control in a world full of things we cannot. Having to deal with mean people doesn't end in childhood. What can I do today to teach my kids that their success and happiness in life will come from the goodness and kindness in their hearts, by doing what they believe to be right and true, despite how it is perceived by others? People will always find a reason to try to tear you down - jealousy, fear, anger - and the only control that you have over that is in how you respond.

I've been following a fellow ePatient mom online lately. While some might think that our situation is grim, I see that moreso in hers. While many see a hopeless end for her child, she sees and endless hope. She fights valiantly, day and night. She shares her story and her struggles and her strengths, and she is judged by many for this vulnerability. And I see a little of myself in her. Why is it that our willingness to share, to stand up and be seen, to tell our whole story with our whole heart is so intimidating to so many other people? We aren't doing it to threaten anyone. Sharing is our catharsis through honesty.

I mentioned in my last post something about mental health issues in healthcare. I know that its the hot button in CF right now, focusing efforts on patients and their caregivers, and I wholeheartedly support it. What I support more is the effort to find ways to work better together to overcome the very things that cause us so much stress and anxiety, to embrace the value of peer to peer support, to collaborate on solutions for improvement. There's not a person reading this who hasn't had some sort of interaction with the healthcare system, being on the receiving end, the patient side, who hasn't felt judged or labeled or misunderstood by the person providing the care - being labeled (formally or otherwise) as a difficult patient/parent, being non-compliant, having a mental health issue because we simply don't agree. How do we change that stigma, make patients feel more like partners, going in to consult with a subject matter expert but being of equal importance in what they bring to the table, their experience.

A few nights ago, in response to a tweet by Joyce Lee about being a "maker" in healthcare, I tweeted this: This is what I most wish the #cysticfibrosis comm would see, realize the potential of themselves to create change. I bring it up because I got a rather interesting response. An adult with CF responded to me by stating that most successful adults with CF are already doing this. YES! Exactly! The "successful" are the already involved. We are the ones who are connected and who are creating, who are working with our care teams and with our community to learn and share and grow. But how do we show the unsuccessful/others the power of their own involvement & untapped innovative potential? This is what I am striving to learn in 2016. Not just this, but to prove to everyone else, the institutions and the foundations and the whole community the value of these people and their ideas and involvement to the whole system. Its different than how things currently work, its disruptive, but its critical. And I believe we have to start with a greater appreciation for the perspective of the other side. Listen to one another, like really listen. In this great post by Susannah Fox, she so eloquently states, "Test your idea with potential customers and — this is key — listen to them, especially if their feedback is not what you expected."

I turned on the song "Mean" by Taylor Swift for the remainder of the short drive to school and briefly reflected on it with the kids as we turned into school. Your success in life is up to you, and mine up to me. I get to decided my happiness and write my own story. I choose courage and I hope that my kids will do the same. And there will always be some people who are just mean, but that's their problem, not mine.

Here are some of the lyrics for your own self reflection as I encourage you in 2016 to listen more, and to stop being mean.

Mean, by Taylor Swift

You, with your words like knives
And swords and weapons that you use against me
You, have knocked me off my feet again,
Got me feeling like a nothing
You, with your voice like nails
On a chalk board, calling me out when I'm wounded
You, picking on the weaker man

You can take me down
With just one single blow
But you don't know what you don't know

Someday I'll be living in a big old city
And all you're ever gonna be is mean
Someday I'll be big enough so you can't hit me
And all you're ever gonna be is mean
Why you gotta be so mean?

You, with your switching sides
And your wildfire lies and your humiliation
You have pointed out my flaws again
As if I don't already see them
I walk with my head down,
Try to block you out 'cause I never impress you
I just want to feel okay again

I bet you got pushed around
Somebody made you cold but the cycle ends right now
'Cause you can't lead me down that road
And you don't know what you don't know

Someday I'll be living in a big old city
And all you're ever gonna be is mean
Someday I'll be big enough so you can't hit me
And all you're ever gonna be is mean
Why you gotta be so mean?

Tuesday, January 5, 2016

You wanna talk about mental health issues in CF? Try this on for size. I just got home from my local pharmacy. Its the FIFTH time I've been there in 3 days trying to fill one prescription. Here's the back story.

At the end of the year we got a letter from our dietitian sharing news of a great program offered by the manufacturer of one of the medications Drew takes. They are willing to cover up to $1750 per month toward the cost of the medication for folks with a high deductible insurance plan, a group which we would be part of starting in January. The really cool thing was that this medication, through our insurance only cost $800/mo, so it would be covered completely with a $5 co-pay from me, and the manufacturer would therefore pay $2400 ($800/mo for a 3 month supply = $2400) toward Drew's deductible, getting him incredibly close to reaching his out of pocket max, great news for a chronic illness kid who has incredible expenses. With a high deductible plan, we pay everything until he reaches his deductible, and then co-insurance kicks in, or something like that, so if someone other than us is helping us to reach that deductible, that's fantastic news and savings. You get the idea.

So I got a prescription from his doctor when we were there last month for a 3mo. supply of this particular medication and my plan was to take it to the local pharmacy on Jan.1 before any other medical crap happened that we'd be solely responsible for paying for so that this drug manufacturer could get him close to meeting his deductible. Here's the timeline of events that followed:

1/1/16 - Drop off prescription at local pharmacy and present our new insurance & the manufacturer discount card

1/2/16 - Got a call that the insurance information they had was invalid, so I returned and re-presented the same insurance card and manufacturer discount card and asked them to run it while I was there. They did, and told me that the medication wasn't in stock but that they could have it by Monday (1/4).

1/4/16 - Received a text message from the pharmacy that the medication was in, so I returned to the pharmacy and was told that my co-pay was $600. I asked them if they'd run the manufacturer co-pay card and they said yes but it only took $1800 off the 3mo supply. I told them I needed to talk to the manufacturer or our dietician and left without the medication. So I emailed her and she confirmed the $1750 with the rep and then called the pharmacy herself and they told her (the same pharmacy that I had left 3min prior) that it looked like my cost when they ran it through the system would be $5. No idea what I had done or said wrong but happy that the problem seemed to be fixed.

1/5 - Stopped back at the pharmacy to retrieve the medication and pay my $5 and was told that not enough of the medication had been ordered yesterday so more would be coming on the truck this afternoon, to stop back after 2.

Later that same day, after 2 - Stopped back at the pharmacy to get the medication and pay my $5 on my way to pick the kids up from school, and was told that my co-pay was $600. WHA? How did we revert to the $600? I don't have time to discuss because I've gotta get the kids so I said I'd swing by tonight.

30min ago - I stopped back at the pharmacy to try to figure out what was going on and the pharmacist (or the pharmacy insurance tech, lovely woman) explained that someone must have entered it into the system the wrong way, despite the fact that it showed the $5 outcome I had been expecting (?) and that the co-pay card was only taking off the $1750 once, not three times for the three month supply, and there wasn't really anything they could do about it. As they saw it I had 2 options: a) pay the $600 and be grateful for the contribution the manufacturer was making toward the medication so that I didn't owe $2400, or b) get a prescription from our doctor for a 1mo supply, call our prescriptions benefits plan and ask for an override on their rule that we must obtain a 3mo supply, and, if approved for the override, enjoy a 1mo supply of the medication for $5 every month. The issue with this (there are actually many) is that only $800 is being paid toward his high deductible, not $2400 defeating the whole purpose of this plan in the first place.

See I'm not mad at any ONE person. I'm not even really actually as mad as I would typically be in these situations because its not the fault of one person. Its a failure of the system. This patient assistance program was designed to help the patients and families who have situations similar to ours - chronic illness, high medical expense - and it seems to be incompatible with our insurance plan, something also designed (though I'd argue this one big time) to help people manage medical expense. The pharmacy hasn't offered much help for where we go from here. I'll email his dietician again to see if she can help figure out what's going on. This is taking HOURS of my life. I've shared in many previous posts (like this, and this, and this) how I spend many of my days. This shit has got to be fixed. The system is failing the people that it is trying to support. I've most certainly been identified "non-compliant" in the "pharmacy refill tracking" system the CFF uses for capturing medication non-adherence (my opinions on that will be saved for future conversation or comment), but I assure you that this isn't a failure on my end. Tell me what I could have/should have done differently? How much more time should I commit to this? Did I mention that this is one of 12 medications that he takes on a daily basis? Wouldn't it be great if they all had a manufacturer assistance program that worked like this....SAID NO ONE EVER. What would be great is if I called in the information, it all ran through smoothly, my life was made easier and we all lived happily ever after. (as a sidebar I do believe that this is still possilble in healthcare and its what I work on tirelessly trying to achieve). I will keep going back and calling and emailing until we figure it out (or don't) and will be grateful for whatever savings we are able to see, though no one will understand the strain that all of this time and these calls and trips has put on my life.

It should be no surprise that I am at my wits end today, with this FIFTH TRIP to the pharmacy, still no medication. Another kid came home sick from school so I'm trying to pay attention to him while I worry about what will happen if Drew catches it too. I'm trying to help run a girlscout meeting because my daughter loves girlscouts and if there was no one willing to lead then there was no troop, and she deserves my time and attention just as much as any of my other kids. The current state of our house could best be described as "there appears to have been a struggle" as we wade through our own filth of a small remodel project. Because we are people too. In fact, we are people first. We are more than just CF and medication reordering and treatment administering and appointment scheduling. The only crazy you're allowed to accuse me of being is crazy in love with this family and this life and doing the best damn job that I can do. Stressed out? Anxious? Of course. But find me someone in 2016 who is not. I assure you that many a person, CF mama or otherwise, would have long given up on this quest for savings or flown completely off the handle, both perfectly acceptable responses to this nonsense. I'll figure it out, but i'm worried about the people who can't, Lets find a way to make the system work better for the people who desperately need it to work.

"65 Roses"is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.

This blog, 66 Roses, is dedicated to finding the cure.

Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Thick mucus clogs the lungs and leads to life threatening infection. The pancreas is also obstructed by this thick mucus production, imparing digestion and leading to malnutrition. - www.cff.org